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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. ukxmrv

    Dr. MONTOYA fired in Stanford!

    I'm glad it's out in the open https://www.healthrising.org/blog/2019/06/06/dr-montoya-response-stanford-termination/?fbclid=IwAR1IbpQRYoqjFzVwtlsg673tVHa3I88GasMfanTO9ziaT9Oic2cPc1iWMFE
  2. ukxmrv

    Dr. MONTOYA fired in Stanford!

    Is the Standford Daily website the only source of these allegations? I understand that this is just a student run website. Patients ringing the clinic are told he's on a sabbatical. It's doesn't correspond. It's not about disbelieving victims. They don't even need to come forward and I don't...
  3. ukxmrv

    Magnesium injection

    Sorry it is too long ago to remember before and after doses and levels. It was IM and monthly. Took around 4-6 months before I noticed the difference. Yes they are painful. If I could afford to pay for them I would have continued,
  4. ukxmrv

    Magnesium injection

    Yes, I had Magnesium Sulphate injections and they did raise my blood test levels. This was after a private blood tests showed low.l The most notifiable symptoms change was a reduction in muscle pain and twitching, Also a small increase in stamina.
  5. ukxmrv

    Fluge, Mella 2019. B-Lymphocyte Depletion in Patients With ME/CFS. (The final report on the Rituximab trial!)

    I have had cancer treatment but not Rituximab. Did a course of FEC-T (which includes Cyclophosphamide ). My problem with the regime would have started with the paracetamol and the Dexamethosone. Can't tolerate either of these. In Europe we don't seem to use Benedryal in the same way USA docs...
  6. ukxmrv

    Provoking Herx as diagnostic tool

    The problem is that you don't know if it is a herx or a bad reaction to a drug or a supplement that doesn't suit you So many things make me feel bad and I've never got over any of these bad reactions and then had an improvement in symptoms. It's been claimed before that x is causing me to herx...
  7. ukxmrv

    Stress Makes PEM Worse?

    Could it be hunching up your muscles with tension and the blood not flowing to your brain? Or the extra cold?
  8. ukxmrv

    SEID and antidepressant failure

    I've only ever had bad reactions to AD's. It must be hard for people with ME and depression.
  9. ukxmrv

    Who diagnosed you?

    No I don't think you are unlucky but with ME it pays to try and take control of the process as much as you can. Sometimes you have the choice of an almost "benign" neglect or actual harm. In my area I have the choice between a "CFS" clinic run by a Psychiatrist who uses CBT and GET only OR...
  10. ukxmrv

    Who diagnosed you?

    It's not the specialty of the doctor that I would look at but the track record and reputation in ME or CFS or FM. Not sure where you are located? My experience has been that some UK NHS Rheumatologists think that ME=CFS=FM or even CF. In some cases (and this goes for other NHS doctors) they...
  11. ukxmrv

    Malic Acid Supplement- Has it helped your fatigue and exercise tolerance?

    Didn't help with pain either
  12. ukxmrv

    My nose is pinched shut inside. Is this sinusitis?

    I had a CT scan of my sinus area and an infection was eating it's way through there. Part of the sinus area had collapsed and It was badly inflamed. There had been a mixture of a silent infection with some facial pain or an obvious active infection with pus blood etc over many years. My GP did...
  13. ukxmrv

    Has anyone else reached a recovery 'ceiling'?

    Yes, getting stuck at a plateau seems to be a constant feature of the last 30 odd years. I won't call it recovery as these have no where near normal or at all what I was before. I can get to to a certain level of functioning to find that out of the blue I get a terrible flu or food poisoning...
  14. ukxmrv

    Looking for doctor in the US that use Skype

    Try Dr Klimas (I know of a UK patient she Skyped) and see if Dr Enlander is still visiting Europe (heard he was retired in NY but not sure if he still sees patients on his travels). Have you tried Prof De Meirleir?
  15. ukxmrv

    Any recent ME/CFS outbreaks?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598369/ A high prevalence of chronic fatigue has previously been reported following giardiasis after a large waterborne outbreak in Bergen, Norway in 2004. The aim of this study was to describe and evaluate differential diagnoses and natural course...
  16. ukxmrv

    It's affecting dogs and cats now

    It's old news @gbells. Some CFS contacted Dr Tarello long before this forum was created. There were discussions on earlier CFS groups. It's always stuck in my mind as I homed a cat from a woman who was too sick to look after her. Then became sick myself but I could never track her down to...
  17. ukxmrv

    Pregnancy, birth and ME/CFS- my experience

    Congratulations @Bookworm84. So happy to hear your story and imagine you snuggled up with the new baby for Xmas. My best wishes to you and the family.
  18. ukxmrv

    Gupta theory on amygdala overreacting...can someone help explain why some do or don't end up with it

    There is no autoimmune or pre-existing chronic infection from a Gupta perspective - that is why you are struggling to put things together. If you look closely at his work you will find that there is no evidence that the amygdala is involved in CFS or any other disease. It's just a lot of...
  19. ukxmrv

    ME/CFS in the Era of the Human Microbiome: Persistent Pathogens Drive Chronic Symptoms...

    It's been done to death many years ago. Some of the proponents joined online CFS groups way back when it was Vit D and sunlight aversion and then drugs. There was in-fighting even within the group of people pushing the theory and a lot of nastiness. Personally I take a big pinch of salt...
  20. ukxmrv

    Video: "Mutations in Energy and Autoimmune Genes Cooperate to Cause ME/CFS" with Alan Light, PhD

    Dr Light alluded to this when he answered a question from the audience. There were also other questions on roughly acquired vs inherited but my brain is too fried to remember now.
  21. ukxmrv

    Is the “Cry Wolf” Disease Getting in the Way of an Unrelated Diagnosis?

    I've been using a machine like this one http://www.hydromedonline.com/hp_landing.html as the " gentler methods " were great in the short term but in the long term they kept coming back quickly and with a vengeance. Agree completely about the "cry wolf". I went for years with recurrent sinus...
  22. ukxmrv

    Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

    I find paracetamol has no effect on any ME symptoms and oddly enough, this may just be in my case as it is weird, has no effect on pain. Makes me feel weak and poisoned.
  23. ukxmrv

    Got to the point I am scared to try anything

    What jumps out at me is that none of the things you mention are a proven treatment for SIBO. Not sure where you got the idea that a cocktail of herbal supplements would be effective against SIBO. That's not intended as a slight or criticism. I took herbal supplements to try and fight various...
  24. ukxmrv

    Crashing caused by diet change

    I can't tolerate more veges (esp onion, broccoli, caluliflower etc) and most fruit in my diet so increasing these would make me worse. It's a mixture of my stomach not tolerating them plus the "no fuel" reaction you describe. If you are increasing veges and you cannot tolerate them this could...
  25. ukxmrv

    IVIG and Working

    I didn't have any issues after IVIG . Did have PEM which was normal for a trip anywhere out of my home. Took Benadryl which made me sleepy. The IVIG was given whilst I was lying down flat in an air conditioned area and was peaceful. They left me alone apart from a doctor who came in and...
  26. ukxmrv

    Looking for feedback around pridgen protocol

    Hi CB2, Celebrex helps me with pain so much I'd take anything to keep being able to tolerate it. That said, it doesn't hurt my stomach and coffee with Celebrex doesn't do me any harm. We are all different so I think that if you have a strong concern about something not being right for you...
  27. ukxmrv

    Person with Chronic Fatigue doing a research study

    I think you need to learn more about CFS and ME before you can start writing your questions. It might help to work through a list of different criterias and see the symptoms. Fatigue is a symptom of many diseases so describing yourself as having chronic fatigue doesn't tell us anything. Asking...
  28. ukxmrv

    What antidepressant are you on that minimizes fatigue

    No I've not found one I can tolerate but luckily I don't have depression so was able to try other things for pain. Really sorry you are suffering like this and feel so trapped. Quite understand and hope someone can suggest something that helps.
  29. ukxmrv

    Has anyone had any experience with Seka Nikolic?

    That's along the lines of what she said to me. She said she was putting in the energy but my body wasn't able to take the "spark" or whatever the right term is. It was a long time ago. If she was healing PWME in London we'd know about it through the local support groups .
  30. ukxmrv

    Has anyone had any experience with Seka Nikolic?

    Funnily enough I have. Years ago the person who brought Seka to London approached a local London ME group to see if they could try to heal some patients here. About 3 or 4 of us were offered free sessions with Seka and asked to comment at the end on how our symptoms were. It's so long ago that...